Patient financial support and assistance programs

The cost of cancer care can be a major concern for patients and their families. Many national and local service organizations help people with cancer who are facing financial challenges. Several are listed below: Organization Type of support Overview Financial support search Cancer Financial Assistance Coalition is a coalition of organizations helping cancer patients manage their financial …

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Services for communicating patient updates and coordinating assistance

During the course of a health crisis, family and friends are often looking for frequent updates of the patient’s condition and ways they can be helpful to the patient and caregivers. Several web sites offer easy-to-use platforms to communicate updates and coordinate needed assistance, including: Organization Mission and overview CaringBridge Provides a forum for updates …

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Air travel assistance for patients

Cancer patients can often fly to medical treatment centers around the country – absolutely free – in the empty seats on corporate jets or on private planes. Many of these services allow patients to avoid costly airfare, delays and unnecessary exposure to airport crowds. The following organizations work with cancer patients to provide air transportation …

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Low cost housing/hotels near major medical centers

Many major medical centers have a Ronald McDonald house nearby for families with children under treatment, making The Ronald McDonald organization a good resource to locate temporary residence options.   Other organizations that can provide housing support during medical treatments include: Organization Description Healthcare Hospitality Network Healthcare Hospitality Network is a nationwide professional association of …

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Children’s hospital care with no cost to families

St. Jude Children’s Research Hospital is based in Memphis, TN but has affiliate care throughout the United States. Families never receive a bill from St. Jude for treatment, travel, housing or food. St. Jude accepts insurance but many services provided by St. Jude have never been covered by insurance, and will not be in the future.

Social security disability information

The Social Security Administration has designated fibrolamellar as one of the diseases which may be fast tracked to get disability designation. The official announcement details from August 21, 2018 are included here.

Other fibrolamellar websites

Facebook – “Fibrolamellars of the World Unite!” This is a closed group so only those touched by the disease can be part of it.  We encourage all newly diagnosed patients and their families to join. Just go to facebook, type in the group name and request to be included.  An administrator for the group will get …

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Young adult and other cancer websites

FirstDecents.org – challenging outdoor adventures for young adults with cancer ImermanAngels.com – one-on-one support LiveStrong – Lance Armstrong Foundation which includes information about fertility after cancer molecularmatch.com – This site provides information on specific treatments for specific mutations and cancers. chemocare.com – Information about chemotherapy, its effects and side effects, an initiative of The Cleveland Clinic and cancer survivor Olympic skater …

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